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Cece wrote:Blood thinners were tested in MS in the 50s or so without results to be found.

Except the # of mistaken Hughes Syndrome patients in the MS group that might have improved from the thinners wouldn't be significant enough to show dramatic difference to the improvement rate in the placebo group. I haven't looked at the research though so I don't know how it was conducted.

But, we're really not talking about a lot of MSer's who seem to have "dramatic" improvements from venoplasty, it just could be a small minority who have Hughes. That, and the placebo portion who we know are also in there too. I hope I'm wrong.

Cece wrote:I am also not sure if the antiplatelets that are often prescribed (aspirin, plavix) would have an effect on Hughes syndrome or if only the anticoagulants (arixtra, warfarin, lovenox) would?

Hope you're right. Poland has done the most procedures - they use anti-coagulants, right?

Last edited by eric593 on Sat Feb 05, 2011 10:27 pm, edited 1 time in total.

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the CCSVI ultrasound is consistent with CCSVI, MRV does not have proven merit, venography is the gold standard.

go find a doctor who will do a venogram and treat the stenoses he or she will find

Dr. S, As I'm sure you are aware, some of the CCSVI studies presently underway are using US and MRV to assess vein patency. My daughter has the option to participate in one such study in Canada. My question is this: do you believe that such studies are of value in furthering the understanding of the relationship of CCSVI to MS? Or, given that your opinion of MRV is that it "does not have proven merit", do you believe that these studies may simply be a waste of time and money? Part of the reason I ask is that gadolinium is used for the MRV, and why would one choose to have an MRV for research purposes if it is of little value? Thanks for your time, and for all of your contributions to this board.

very sorry for the delay. i needed some breathing space.

i have said that mri does not have proven merit but that means its merit needs to be proven. not that it does not have merit.

the contrast media of MRI is quite safe except in patients who have severe renal failure. I would not hesitate to get an mr with contrast if i needed It. would not advocate an MRV at this time except in a research protocol but i do think that there is merit in determining its role by researching it

we are in this together, i suppose so we must all think about how much we are willing to sacrifice for the learning curve. if you daughter has a chance to help in this, i think she has a decision of conscience to make. No one but she can make that decision.

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

I have never endorsed the haacke protocol because it has not been proven. the haacke protocol has not passed any muster that i know of. it has not been compared to the gold standard of venography as has ultrasound for ccsvi.

interpretation of the haacke mrv is operator dependent as well.

this is not to denigrate dr haacke. I have tremendous respect for him and have hope that his work will be validated.

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

There's some other factors concerning using MRV's. One of which is that we are talking about uber-strength T machines. I am aware of only of a couple of MRI machines capable of producing the magnetic field required for the Hubbard protocol here in Chicagoland. Also, we are talking about much, much more expensive testing for a MRV versus an ultrasound.

Also, an MRV is static and can't show flow dynamics.

The downside is that a doppler ultrasound does need a skilled technician and image interpretor. Training and experience is the key here.

Donnchadh

donnchadh
its always about the training and experience for all the testing and all the treatments.

sorry i have been so reticent but i have been pretty busy and needed some free time...

it has actually been very slow here. I cant yet fill my calendar with patients because of obnoxious delays in getting insurance company credentialing.

what a shame i can only do a few patients a week

i have been working the IVUs, the more i use it the more a rely upon it.

My current thrust is to reduce the diameter of the balloons i need and reduce the amount of vein that gets dilated.

I am using the ivus for very precise measurements of diameter and using these m easurements to inflate slightly less than the prestenotic dilated segment. i am hopeful that this will reduce the intimal damage to the vein ABOVE the stenosis.

but no specular cases to report this week. Snow and insurance are all i have to report

I know some may consider this question not relevant to ccsvi but I think it might. Would you recommend use of the vibrating/power plate as part of an exercise plan or do you think that the vibrations may damage further already compromised veins. (Have tried it once and it feels like even one's brain is vibrating) Research indicates that it is helpful to pwms. My local team asked me to be involved in a research study which is why I would like an opinion.

I had the testing in Poland last June and the Doctor diagnosed slow blood flow in the left jugular. I chose not to proceed with any procedures at that time due to concerns over sticky blood syndrome.

Sorry if this question has been asked before as I know you are busy and involved in a few threads on here.

Thank you again for all your help.

Regards Mary

I must admit mary that i am not particularly informed about this vibratory therapy. I cannot imagine how vibrations would affect flow of blood in patients with CCSVI

i want to inform you that flow problems identified on ultrasound in one vein does not fully describe whether one or all three relevant veins are affected. what do you mean by sticky blood syndrome?

Dr. S, I don’t think your question about “sticky blood syndrome” was answered. It is also known as Hughes Syndrome. The info below is from the Multiple Sclerosis Resource Center site. Also check out http://www.hughes-syndrome.org/overview.htm for more info.

The blood disease that mimics MS - Hughes Syndrome. Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at all. They have something called antiphospholipid syndrome or ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome"...Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat. What is Hughes Syndrome? Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked... Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill. MS the wrong diagnosis? The St Thomas's Hospital found that up to one-third of patients coming to their clinic did not have MS at all, but Hughes Syndrome...Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking. Prompted by a growing number of patients coming to the clinic who had been told they had MS when they didn't, the team at the Rayne Institute questioned a sample of 250 patients with Hughes Syndrome. They found that almost a third of them had originally been told they had MS. How Hughes Syndrome mimics MS Symptoms include problems with: • Mobility - difficulty in walking, tripping and dragging foot • Vision - double vision • Tingling feelings • Fatigue • Balance • Speech • Memory

leetz wrote:Hello, I had 30% stenosis in LIJV and 50% in RIJV...had procedure on the 20th of Dec. did quite well with result's...balance, steady gait, bladder much improved, MUCH LESS SPASITCITY...in the last week steady decline...question being: Is there better result's getting the procedure done again the second time? Or is it likely for the stenosis to happen again so quickly? Thank you for your time )

i think that it is likely that you were incompletely dilated or had a lot of elastic recoil. i think second or even third treatments m ay be beneifical.

i have started to consider whether second venograms and possible an;gioplasties should be done sooner than later as a routine

I had a recent venogram (nfortunately, nothing was done except take images).

What do you think of this jugular vein? Could the valve at the bottom be causing an issue? (There is significant collateral activity at the top of the jugular.) It was ballooned in Aug 2010 but is still the same.

Algis wrote:A quick question: why not to wear a neck brace (cervical collar?) in order to avoid the neck movements that could disturb the healing/incorporation of stent to the vein?

it is virtually impossible to prevent motion of the neck, even in a rigid collar.

Today, i reviewed a stent placed in the upper neck. The stent has clearly been damaged by compression against the transverse process of the second cervical vertebra

Other things are also compressed by the stenting process. Did I mention stretch or compression of the accessory nerve, also known as the 11th cranial nerve. It lies very close to the jugular vein in the upper neck and compression of this nerve leads to shoulder weakness, sometimes lasting a very long time.

I realize we have a long way to go before the standard is set for treating CCSVI. The various methods seem to be multiplying. As for the accessory nerve damage, it is very real. The upside is it does repair itself. Those of us who had this problem saw the problem resolve within 4-5 months. I did wear a soft cervical collar soon after treatment and I can't say if it helped my stents to integrate properly, but my results were good. The collar helped the headaches I was having which were brought on by aggrivating the nerve. My stents are very high, so not everyone with stents will have this problem.

Cece wrote: Thinking over what jak7ham9 said, one thing that stands out for me is that Dr. Dake was able to do a two-month check-up, at which many or most patients received an additional venoplasty or stent. His results may speak to the value of follow-up care, not the use of stents.

Jak7ham9, wishing the best for you.

I can only speculate on any of these results. We have to wait for outcome results in publications.

I think Dake's follow up plan has been very beneficial. In addition, he is always available via email for any questions or concerns. He responds within minutes in most cases. I have been in constant contact with him over the past year. We also send progress emails to him. I am most excited to see the comparison in MRI from my treatment to now. The baseline was charted for us, so we will be able to measure the progress or regression. I wish everyone had a follow up care plan. It is not a one shot deal at this point for most. Our results unfortunately will not be in medical publications because they were not in trial form. (I think )

Long distance followup is difficult but not impossible. However in order for my followup to be logical i am having to find locations where Doppler screening can be done. I think i have canada taken care of but the US is more difficult. i have some ideas but cant get started unitil this followup is worked out.

With the hlp of TIMSers we have created a patient questionaire survey that patients will use before, one month, three months, six months and then every six months. the data can be tabulated and we can see any perceptible changes patients note.

now comes the really difficult part: finding neurologists who will work with me

so far i have found one, not too close but within 45 minutes of my shop. that is similar to salvi to zamboni, so it can work.

i think i am almost ready...but finding neurologists to partner with has been challenging.

s

Dr. Sclafani, As my tentative & (several times) rescheduled appointment is looming closer... I am pondering follow-up doppler tests and the comment you made back on October 14th, as quoted above. Is there a place in Canada where you have arranged for follow-up or is that something you will brief me on once I am there for my treatment? Thank you for your help - just wondering if I need to make some arrangements ahead of time?Deb

the followup ultrasound is quite a challenge for me. we do it and have found a few people in canada who have done it but it is quite problematic to find someone who knows how to do it. Our colleagues out there might be able to give us some sources.

but there hasnt been a paper yet on the appearance of the ultrasound after treatment. i dont have a clear sense of its purpose now and i have dliminated the one month followup utrasound i started doing when i returned to treatment.

I am looking for guidance at the consensus converence in ferrara in march

Am I wrong in recalling that you had stated earlier that you've never seen these kinds of vein anomalies in your entire career and that, even going back to review venograms of past non-MS patients, you didn't find these types of problems?

I'm just trying to reconcile what I thought you had stated (or please clarify if I'm wrong) with the recent BMJ study, the other studies that showed no difference between MSer's and healthy controls' veins as well as Dr. Hubbard's remarks that he, his wife and daughter all showed vein abnormalities on MRV.

Thanks.

i have never met an mrv that i thought was a one to one representation of what i see on venography.

i have stated that i have never seen the kinds of abnormalities i see on ccsvi venography on other patients or otherwise healthy gang members who have been shot in the head

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

I have never endorsed the haacke protocol because it has not been proven. the haacke protocol has not passed any muster that i know of. it has not been compared to the gold standard of venography as has ultrasound for ccsvi.

interpretation of the haacke mrv is operator dependent as well.

I think this depends on what part you are interpreting. The FQ part is pretty definitive - you know how much red & blue blood is passing through all vessels across any of several planes, for a cardiac cycle. You could even increase the number of cut planes and get some pretty accurate hemodynamic data.

What you do with the data is another thing, but I would think it's good to know quantitatively where the blood is coming from and going to (incompressible fluid plus conservation of mass, etc), and how a procedure affects that.

And having the data, you could study their relation, if any, to symptomatic changes.

I agree about interpretation of MR imaging of blood vessels. Those are indeed static pictures that don't tell you why a vessel is pinched, and you don't get to see the valves, etc etc.

You well know Dr Haacke's line of having an MRI "because your neurologist wants you to have one". In the absence of interest by neurologists, I would hope people get FQ MRIs (much less tube time and expense, and operator independent) "because your IR wants you to have one".

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

I have never endorsed the haacke protocol because it has not been proven. the haacke protocol has not passed any muster that i know of. it has not been compared to the gold standard of venography as has ultrasound for ccsvi.

interpretation of the haacke mrv is operator dependent as well.

I think this depends on what part you are interpreting. The FQ part is pretty definitive - you know how much red & blue blood is passing through all vessels across any of several planes, for a cardiac cycle. You could even increase the number of cut planes and get some pretty accurate hemodynamic data.

What you do with the data is another thing, but I would think it's good to know quantitatively where the blood is coming from and going to (incompressible fluid plus conservation of mass, etc), and how a procedure affects that.

And having the data, you could study their relation, if any, to symptomatic changes.

I agree about interpretation of MR imaging of blood vessels. Those are indeed static pictures that don't tell you why a vessel is pinched, and you don't get to see the valves, etc etc.

You well know Dr Haacke's line of having an MRI "because your neurologist wants you to have one". In the absence of interest by neurologists, I would hope people get FQ MRIs (much less tube time and expense, and operator independent) "because your IR wants you to have one".

but it aint over till the fat lady sings

Amen.

drbart
is there a paper comparing FQ MRI with normal controls. that would allow me to make some sense of the data. Till then, no baloney. i will await bologna,

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